Some kindly answer me.

Hello, i'm 47 yr old female, recently been told i have heart failure (not the fluid type one). I know nothing about this ( but it is left hand side?) and cannot get an appointment for months to speak to a dr.

first i would like to ask, suddenly at night when i get in to bed and rest, (not asleep) my oxygen levels go down to 93%, is this ok, it never used to do this a month ago.

Secondly, i am getting horrible cramps/spasms, i.e. in my toes, feets, calf and back of thigh, i move to do something and suddenly my foot goes into a big spasm, and the whole foot starts to turn inwards in a deformed position. It sort of pulls itself inwards and i can't do anything about it. Today ive woken up with pain and discomfort in the lower back of my thigh, i bent down to feed my cat and screamed in pain, i had to stand up straight very quickly. could these severe cramps/spasms be caused by lack of oxygen from my heart failure.

PS... if anyone knows of anywhere i can ask someone questions about my heart failure i would be very very grateful. i'm desperate for some answers.

Many thanks, Willow.

Last edited by willowthewisp; 03-31-2012 at 04:19 PM.

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Machaon (04-01-2012)

Dr's have said the breathlessness is not associated to my chemo or cancer treatments and they dont understand why ive got it. Ihad a 24 tape test and all that came up was tachycardia. Ive had an echo and again i was tachycardic, these tests were a month apart so the tachy is constant.

Saw my oncologist today and im still tachy cardic,and this is another month on, it never stops, so she said she will send me to see a cadiologist. This will take a ages.

Quote:

Originally Posted by willowthewisp

My heart rate is never under 100 anymore, bit its not over 130 but its horrible where its racing all thetime as i feel i cant rest.

First, let me say how profoundly sorry I am to hear about your breast cancer struggles and now your diagnosis of heart failure. You have been thru a lot and have shown a lot of determination and courage and you have beaten breast cancer. But, unfortunately, it looks like you are going to need your determination and courage to fight another battle that you can also win.... this one against heart failure!

Chemotherapy can weaken the heart muscles which can result in heart failure.

Constant tachycardia can also weaken the heart muscles which can result in heart failure. A weakened heart needs a nice, restful, healthy heartbeat.

High blood pressure can also weaken the heart muscles which can result in heart failure. It is very important to maintain a healthy, low blood pressure 24 hours around the clock!

I've had heart failure since 1987, when I was admitted for 10 days down at Mount Sinai Medical Center down in Miami Beach. At first I did OK, probably due to the load of medication they gave me. But I was getting progressively worse. The slightest physical activity would give me breathing problems, fatigue and chest pains for several days!

Finally, the breakthru in my heart failure happened when I went on a small meal frequent eating, very healthy diet. It makes sense. The healthier our diet, the healthier we are. Plus, if we eat small, healthy meals, our weakened heart does not have to work too much during a digestion cycle.

If you would care to read about my recovery from heart failure, please read my thread in Heart Disorders named: What I have done to survive Heart Failure & AFib with a high quality of life, using the following link:

Feel free to ask questions. I'm not a medical professional, but I can tell you what I experienced and what has worked so well for me.

However........... you have said that you have constant tachycardia. Are you still in tachycardia? If so, it is very important for medical professionals to slow down your heart rate, IMHO! Heart failure patients need to take the stress off of their weakened heart by having a nice, calm heartbeat and small low calorie meals; and by avoiding nasty chemicals, odors, allergens, etc., that can excite the heart.

Machaon and Vyking, thank you so very much for your replies, it was so nice to have someone answer me.
Machaon, wow i read your story, you do an amazing amount of exercise, i don't know how you manage to do it, and to keep to your strict diet, but well done you.

Machaon, My life is in turmoil at the moment as there is no one to ask any questions, i have a meeting at work tomorrow to consider my future with the company, (Occupational health and my bosses) and they are going to ask me lots of questions, but as i dont have a dr i can ask, i dont have any answers for them, but i know at the end of the day, my company would prefer me to leave. They are trying their best to get me to leave, and i can see that i can no longer work full time, i am just too tired.

I have not done any form of exercise for a year and a half now, first of all in November 2010 i was walking across my lounge floor and did a tiny slip on the wooden flooring, and for some strange reason both sides of my ankle just completely snapped in two? I didnt even fall to the floor, i just heard both side of the ankle snap, one shot out the side of my leg, and then my ligament snapped in half as well. I cannot put in to words the pain i felt, but i had to be rushed by ambulance to hospital and have pins and plates put in my leg, which has to stay there for life now, but the dr's said i had the damage of a car crash victim, and no one knows why i had such severe damage with just a tiny slip on my floor? This took me a long time to recover from and learn to walk again, and just as i learnt to walk, i was told i had aggressive breast cancer. Well that takes us up to date with all the treatment etc etc. But i feel i have totally been left in the dark by my dr's. As i previously posted i went into hospital in September last year as my heart just could not stop racing and tightness across my chest. I was told about the bottom of my heart being a bit stretched and not beating correctly with the rest of my heart, i was sent home on 1.25mg beta blocker and 1.25mg of Ace inhibitor and told to come back in 3 months time, which i did. 3 months later in Dec 2011 i went back, was told i have some Pericarditis, but not to worry, keep on the meds for life now and that i am 'TOTALLY FINE' , no mention at all of heart failure or any other heart problems, so i went home thinking i was absolutely fine.
I then found i could not stop sleeping or feeling tired, my memory was getting bad and i was constantly forgetting what i was doing, or where i was going. Dr's where telling me at the beggining that this was a side effect of my chemotherapy. But it's got worse and worse, now i feel like a 94 year old and not a 47 yr old. My joints hurt, im constantly needing to rest and have no energy, but as there is nothing wrong with me, why on earth am i like this, maybe depression i thought, but i did not feel depressed as i had just won the battle of my life, i felt on top of the world.

I then started to get a racing heart again, back to the local dr who upped my Beta blockers to 2.5mg. I asked my dr straight to tell me what was wrong with me, and he told me i had heart failure, well can you imagine the shock when you've been told you are fine?? Then i just started to get worse, more tiredness, more forgetfulness and terrible weakness and breathlessness. Back to my local dr, who by the way is lovely and helpful, he again upped my betablockers to 3.7mg and said i need to go back to see the heart dr at the hospital urgently to see what is going on. But that urgent appointment is 3 months away, we don't have private health insurance here in England, we just have to wait our turn, so there is nothing i can do to find out why i'm feeling like i feel.??

I decided to ring the hospital and speak to my heart dr's secretary to see if i could speed up my appointment, i was very lucky that my heart dr just happened to answer the phone as the secretary was off sick. She made it clear that she was in a meeting and did not want to talk, so i very quickly told her i was having difficulty with everything and that my local dr had told me i had heart failure, and she replied with ' oh i don't think so'?
But she said she did not have my notes there and was very busy and i would get an appointment, which i did, for 3 months later. This has left me even more confused now?

2 weeks ago it was Mothers day and we went out for a meal, i only ate half my meal and half my pudding, had a glass of wine, ( i don't drink at all normally) and a coffee. I came home and my heart hurt, it would not stop racing, it would not come below 115 bpm, 6 hours later it was still racing so i called a dr who said i needed and ambulance, off to hospital i went and waited ten and a half hours left on a trolleyto be seen by a dr, this dr went on to say i had PAF??????? I asked him to explain to me what was happening to me and he said it meant i had Arterial Fibrillation that stops and starts but it will all be explained in my discharge letter. He wanted me to go on a 7 day heart monitor THAT SAME WEEK, to see what my heart is doing, and to have a visit from a Heart Failure nurse so she can explain to me all what is going on. ( why a heart failure nurse if i don't have heart failure?) Well that was over 2 weeks ago, i never got the discharge letter to tell me what was happening to me, ive been chasing it ever since, which is just stressing me out, ive had no appointment for the heart monitor to be fitted and no appointment to see the heart failure nurse, our national health service is in crisis and it is just so badly run. They also put my beta blockers up yet again to 5mg. So i am left here wondering why i went to hospital for that day, what exactly did they find. I have no one to ask, no one to turn to or anything.

I did ask my local dr for copies of any letters he had from the heart dr i see, or any other letters concerning my heart, and i was surprised to read these letters as this is what they said, but again i don't know if this means a great deal or not.........
Mild dyskinetic septum.
Mild MR .
LV apex/lateral wall/inferrior apical wall appears hypokinetic
Plus the mild Pericarditis
Plus i was born with mild Pulmonary valve stenosis.
Plus this AF thing.

I don't know what of the above means i have heart failure, but my local dr said that i most certainly do have heart failure and on this 'New York scale ' thing he rated it on, it was 2 out of 4.

So all the above confuses me totally, would the above mean that is why i feel like i feel, or am i being over the top, i just don't know what to think.
No one has told me not to eat big meals, nor not to do anything that might effect my heart.

The other thing i have now is for example last night, i felt i could not breathe properly, so i ended up staying awake for the whole night as i could not sleep. I had to keep opening my mouth to gasp for air, then try and get to sleep, but i never managed to get any so today i feel rotten, im tired, weak and its horrible. I do have one of those finger pulse monitor things that measure your pulse and oxygen levels, and last night mine stayed down at 90% to 91%, but if i opened my mouth and took a big gasp of air it would go up to 97%? Why is this happening? I just don't understand and don't know who i can ask.

Is it ok to let my oxygen levels be this low for hours on end, i just don't know and cannot get an appointment any sooner with a heart dr, still got 2 months to wait.

Today as i said i dont feel great, im weak and get breathless so very easy, but i feel like i have chest pain, but its in my back, not my chest?? All i can say is its like someone keeps pinching my heart, but through my back, and it hurts. Is this just a muscle problem or would it be down to what i have wrong with me, should i be doing anything about it, can you see how confused i am now.

I don't have the same heart failure as you, i dont have the one where i have fluid, so i can lay down and am ok, i dont swell up or anything.
I am going to go back and see my local dr tomorrow and see if there is anything else he can help with, but as he said to me before, he cannot give me the proper advise i need as he is not a heart dr.

I'm so sorry to go on this long, but i so need answers asap, i just want someone to look at what it says i have wrong with my heart, and tell me if this is why i feel like i am feeling and the symptoms i am getting are because of this as well. I hope you can understand in all my warbling on what i am trying to say,

willow....you mentioned that you're 47. that's right around the time of perimenopause. i went through a living hell when i started mine, with consistent tachycardia that would last 10 to 12 hours, feeling weak, feeling almost drunk sometimes, freezing so bad that 5 comforters couldn't warm me up, and my blood pressure was generally high due to the fact that my heart rate was so high. to make a long story short....my doc first treated me for anxiety and one day when i was having the tachycardia, i took a 10mg valium and went to see her. asked her if i seemed calm and she said "very". then i asked her to take my blood pressure and it was high. she said...okay...i know what his is. she put me on hormones. single dose estrogen and double dose progesterone. i was having estrogen overload.needless to say...my episodes would happen maybe once a year and not nearly as bad as they had been. then i was okay for a while and starting getting all kinds of other symptoms. i was very assertive with my doctors cause i knew this wasn't anxiety related. eventually after many years....i had read an article on autoimmune disorders. finally...my blood work showed that i had sjogrens syndrome and went on to develop fibromyalgia. pericarditis happens to be one of the many things that a person with sjogrens can develop. i aske my doctor if she would humour me and do an antinuclear antibody test on me and she said sure. my test results showed positive but low positive. after 2 more years i went to an internist and she did more precise testing and found that my ssa levels were also positive. your story just sounds too familiar with the way my life has been for the last 10 years or so. i'm sorry about your bout with breast cancer and glad that you're a fighter, but it wouldn't hurt to ask your doctor to do this test. pericarditis can be controlled with steroids in a autoimmune disorder. this is just a suggestion and it certainly wouldn't hurt to have the blood tests just to confirm that this is not the case. i hope you will consider it.

Willow- I know someone who went through chemo for ovarian cancer. I remember they had to give her some heart drug because of the toxicity. She was having weird symptoms for a few years. Weird chest sensations she couldn't even describe. Feeling like fainting sometimes and short of breath. It seemed to come and go. She refered to them as spells. Low energy. Always felt tired and wanting to sleep. Over about 2 years it just sort of gradually resolved itself. She no longer needs the heart drug and has been doing a lot of hiking etc. Sounds like you might have some anxiety/panic symptoms too. It's amazing how they can make you feel (just look over on the anxiety or panic boards). Maybe valium or xanax would help some. They can at least take the edge off.

Hello, its me again.... still having problems i'm afraid and i still dont know what to do. AFter having 2 nights of sleeping badly and waking up feeling ill with severe tiredness, i went to bed last night and i could not sleep, when i did sleep i found myself waking up but could not work out why? i found that i felt i could not breathe properly, but it feels like i cannot get enough air up my nose, im not bunged up or anything, so i tested my oxygen levels and they were down to 90%, i now wonder if this is why i keep waking up and i feel so uncomfortable, i toss and turn all night long. my normal oxygen level is 97/98% which it is right now whilst i'm sitting up typing on my lap top, but goes right down when i lay down or go to sleep. As i said i cannot get an appointment with a dr till june, i just dont know what to do .??

willow....i too think that part of your problem is that you're seriously stressing...and with good reason. we are all afraid of the unknown and you're right...the medical system anywhere...just sucks. i know this is harder done than said...but you have to try and relax and try to take your mind off of what your body is doing right now. just accept it and go with it. when we have no control over a situation, it makes us terrified. when we're terrified...we stress. when we're stressed we can make ourselves very, very sick....and i'll be the first one to tell you, just how sick you can make yourself. anxiety can cause most of the problems you're having. as far as gasping for air and feeling you can't breathe...that's one of the scariest symptoms of anxiety. you have to remember too...that when we're at rest....not necessarily sleeping...our blood pressure drops...our breathing slows and becomes more shallow and even more so when we're sleeping, but that's perfectly normal. your doctors seem to be all over the place about what you actually have. one tells you this and one tells you that. if i were you....i would first....learn relaxation techniques....try to stop the anxious thoughts that you're having and just do what you can do. work on ridding yourself of your anxiety and wait until you can get a definite diagnosis. if my doctors where all telling me different things....i wouldn't believe anything they were saying until i got that same diagnosis from all of them. i have mild supraventricular tachychardia and i get the skipped beats, flutters, racing heart etc...and usually several times a day...but when i'm stressed about something....i get so many of them that i end up going to urgent care because they start scaring the crap out of me. that stress also causes me to have back and chest pain like you were describing...which is actually severe heartburn and of course...i become totally anxious and start getting sicker and sicker. i'm starting to learn....why should i make myself so sick, over something that i can't control. then i tell myself....if i'm going to die....again....i have no control. sometimes....when we have anxious thoughts and we're so worried about dying....in all honesty....psychologists believe that the reason we're so worried about dying is because we feel that we haven't really lived. it makes sense. we waste love and happiness and beauty and all of the good things that we could do....because we're afraid of dying. so now i tell myself....just live.

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when my doctor discovered that it was my hormones that were causing it, she put me on hormone replacement therapy. they have to give you both estrogen and progesterone....but because i had too much estrogen, she doubled my progesterone. progesterone is what causes our brains to relax. estrogen is what makes us hyper. so since my heart was hyper, so to speak....she needed to adjust my hormones to even them out so my body wouldn't over react. tachycardia is not dangerous itself unless it goes on for hours and hours. some of my episodes would last up to 12 hours with a heart rate of 180 to 200 beats per minute. this causes severe exhaustion because it's like you're running a marathon for half a day. the reason doctors suggest you go to the hospital when your heart rate stays high is because if it lasts too long, your blood can clot. when i would go to the hospital....they would just hook me up to all of the monitors and keep and eye on me. eventually...it would slow down due to the fact that i would suffer severe exhaustion. if it carries on too long, doc's would give you an injection that slows the arythmia's, but i never did have to get the injection. i think they wait up to 24 hours if someone is younger, but it's a lot harder on the elderly so they usually do get the injection. you have to remember that your heart is the strongest muscle in your body. it never stops beating your entire lifetime. it can take a lot more than we think it can. why joann....do you suffer with increased heart rates? how old are you? by they way...doc's at the hospital, did try to give me prescriptions for heart pills, but i refused to take them. problem with taking those is that when you get through whatever distress is causing the heart to do this.....the heart pills are very hard to get off of. they tend to cause worse symptoms when you're withdrawing from them. they told me nothing was wrong with my heart....so why should i take a heart pill. doc's only know how to make us feel better. they're not there to cure us.

Yes i guess i must be stressing to much if people on here that don't know me are picking up on it. i am trying to relax more now, not using the monitor so much, only if i start to feel ill. I.E when it goes low at night etc, it will still drop low but i am just going to wait till i see this specialist now.
The main reason i am stressing is because last week my company decided i am no longer fit for work, they are sending me for ill health retirment, this means i am now living on no income and once they actually give me the ill health retirement, i have no job or income. The thing is, as i don't see the heart dr till middle of June, if she then says, oh your fine, you can work part time, i have already lost my job, i can't wait till June to decide as my company insist i go now. They did say that it would open doors for me to claim benefit if i am ill health retired, but if this dr says i can work, ive already lost my job. I will lose my home if i dont have some form of income, they have already tried to take my home whilst i was fighting cancer because my sick pay stopped, this is what is stressing me the most. I am going to have to slow down,take it as it comes etc, but if i did get to see my heart dr now, at least she could say, yes you can work part time, or no, with the problems you have now, i fully support your ill health retirement. i feel too unwell to go to work at all, ie, breathlesness, chest pain, plus lots of side effects i still have from chemo and radiotherapy. i am on anti depressants and they do help, but i just so wish i could sort this situation out now, not in June. x

willow....i can understand your plight because i was in a similar situation years ago. i'm going to bring up this control thing again because you can't control what is going on right now. what you do have to do, is realize that everything will work itself out. i'm not a religious person but i do believe in a higher power. things happen for a reason and maybe if you think deeply about things that have happened in your life...like your cancer....you survived. you are going to survive this too! things that happen seem to happen at the most in-opportune times of our lives, but we all seem to get through it. it may not turn out like we want it to....but it works itself out to make sure that we're okay. at one point, i didn't want to lose my house either, but....i knew i could no longer afford to hang on to it. i was lucky that i did have the house, because when i sold it, i paid off all of my debts and moved to another city with better opportunities. now...that's not what i wanted...but that's what i got. i now realize that with what i suffer....i couldn't have kept up the maintenance and all the things a home requires, so maybe, how it happened was what was best for me. hang in there sweetie. everything will work itself out. just have faith and don't dwell on what you can't control. keep in touch and let me know how things are going...okay?

Last edited by hb-mod; 04-11-2012 at 05:38 AM.

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birdmo (04-20-2012)

Thank you for your reply booboo, i do feel th** wh** is going to happen will happen, if we cut right back on everything we should manage,, but it doesn't help when you have a husband th** walks round the house all stressed up, he is like ' woe is me' and its driving me crazy. I am worried also but he really does go on a downer. my house is rented not priv**e, so we cannot sell etc, we have to stay here, but if we pull our belts in tight, we should be ok, well th**s wh** i think, but hubby can really bring me down where he is such a very neg**ive person, i am ** the stage of ignoring him as th** is the only thing to do sometimes. i'm sure i feel a bit of bitterness with hubby as i think he feels if i really push myself i could go back to work, but i feel th** if i go back to work i would finish myself off, i just feel so ill. Both my company and my dr have said i need to give up work, so they are the best judges in my eyes. And one thing th** has made me laugh is the fact th** all the posts on here are coming out with two letters blanked out, a and t, lol i don't know why but ours and other peoples post have these covered up with stars, something silly th** brought a smile to my face lol xx

you're welcome willow. sorry that you don't have the option of selling. you really must be going through a lot, having a husband that can't be supportive of your situation too. i'm sure you feel overwhelmed a lot. well....you know what they say....god gave man the physical strength and women, the mental strength...lol. i hope no men are reading this post...lol. at least you have some support in this forum anyway. regardless of how close we are to each other....there's always someone here to chat or vent with. you need to think of you and your health first. one thing at a time. have you tried explaining your situation with your job to your specialist about them wanting to push you out and everything else? i would try my darndest to get them to push the appt up or even see if they could give you another referral and transfer your tests results to another specialist that might be able to see you sooner. don't give up....you're a tough cookie. i can tell... keep me updated or just message me if you want to chat. i'm in and out of here pretty much every day.

Last edited by hb-mod; 04-12-2012 at 05:47 AM.

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willowthewisp (04-12-2012)

Machaon, wow i read your story, you do an amazing amount of exercise, i don't know how you manage to do it, and to keep to your strict diet, but well done you.

The amount of exercise that I do was gradually built up over the years as I continued to improve. At first, all I was able to do was walking 30 minutes a day, twice a day. If I did anything more than that I would be sick for several days with breathing problems, fatigue, chest pains, etc.

As far as my strict diet? Well..... a damaged heart messes up the body's ability to process calories, especially carbohydrates. Too many carbs in the diet of a heart failure patient causes all kinds of mayhem inside the body. How many carbs is one limited to in one meal, or for the entire day? I don't know. Every patient has to find out for themselves.

My current diet is around 1500 calories per day, divided into 6 meals, or 250 calories per meal.

I found that I not only had to eat small, balanced healthy meals, I had to limit the carbs of each meal. A small meal with too many calories can be very harmful to heart failure.

Another requirement of a "heart failure" diet is that sodium, potassium, calcium and liquids all have to be kept at a lower limit than for a normal heart, partially because of the heart failure and also because of interactions with the medications.

Quote:

Machaon, My life is in turmoil at the moment as there is no one to ask any questions, i have a meeting at work tomorrow to consider my future with the company, (Occupational health and my bosses) and they are going to ask me lots of questions, but as i dont have a dr i can ask, i dont have any answers for them, but i know at the end of the day, my company would prefer me to leave. They are trying their best to get me to leave, and i can see that i can no longer work full time, i am just too tired.

Sorry to hear about your difficulty at work. You would like to be healthy and able to work, but if that is not to be the case, are you covered by a LTD (long term disability) policy?

Quote:

I have not done any form of exercise for a year and a half now,

Exercise is important, but to someone with heart failure, exercise has to be limited until the heart has recovered somewhat. A cardiologist could assess the appropriate exercise level. Walking is a particularly good exercise.

Quote:

first of all in November 2010 i was walking across my lounge floor and did a tiny slip on the wooden flooring, and for some strange reason both sides of my ankle just completely snapped in two? I didnt even fall to the floor, i just heard both side of the ankle snap, one shot out the side of my leg, and then my ligament snapped in half as well. I cannot put in to words the pain i felt, but i had to be rushed by ambulance to hospital and have pins and plates put in my leg, which has to stay there for life now, but the dr's said i had the damage of a car crash victim, and no one knows why i had such severe damage with just a tiny slip on my floor? This took me a long time to recover from and learn to walk again, and just as i learnt to walk, i was told i had aggressive breast cancer.

When you first heard that diagnosis, you must have been in shock! I cannot imagine what was going thru your mind at that time. It hardly seems fair to be dealt the nasty diagnosis of aggressive and possibly fatal breast cancer after going thru the misery that you had just gone thru!

Quote:

Well that takes us up to date with all the treatment etc etc. But i feel i have totally been left in the dark by my dr's. As i previously posted i went into hospital in September last year as my heart just could not stop racing and tightness across my chest. I was told about the bottom of my heart being a bit stretched and not beating correctly with the rest of my heart, i was sent home on 1.25mg beta blocker and 1.25mg of Ace inhibitor and told to come back in 3 months time, which i did.

It is absolutely essential to have your heart in a nice, calm, restful state. Digoxin is an absolutely wonderful medication for slowing down the heart with limited side effects, although it also increases the pumping action of the heart. Digoxin also works very well, to treat heart failure and Atrial Fibrillation, when combined with beta blockers like Coreg. I don't understand why Digoxin is not prescribed more for people with racing, erratic hearts.

What type of beta blocker and ace inhibitor are you on? To me, the all time best beta blocker is Coreg, which is available cheap as the generic drug Carvedilol. I don't know what it is called in England.

Quote:

3 months later in Dec 2011 i went back, was told i have some Pericarditis, but not to worry, keep on the meds for life now and that i am 'TOTALLY FINE' , no mention at all of heart failure or any other heart problems, so i went home thinking i was absolutely fine.

Your doctor KNEW that you were NOT totally fine, and so did you!

When my heart was much worse, I used to get pericarditis or pericardial effusion whenever I would lie flat on my back, or on either side. After I got up, my breathing would get better after a few hours.

Quote:

I then found i could not stop sleeping or feeling tired, my memory was getting bad and i was constantly forgetting what i was doing, or where i was going. Dr's where telling me at the beggining that this was a side effect of my chemotherapy. But it's got worse and worse, now i feel like a 94 year old and not a 47 yr old. My joints hurt, im constantly needing to rest and have no energy, but as there is nothing wrong with me, why on earth am i like this, maybe depression i thought, but i did not feel depressed as i had just won the battle of my life, i felt on top of the world.

Beta Blockers and Ace Inhibitors try to block some of the hormones that give you energy. So..... when you are on these medications it is common to feel drained and tired, especially within an hour of taking them. They kinda, also, calm you so that you are more relaxed and less stressed. Unfortunately, there are other side effects of these meds.

Quote:

I then started to get a racing heart again, back to the local dr who upped my Beta blockers to 2.5mg. I asked my dr straight to tell me what was wrong with me, and he told me i had heart failure, well can you imagine the shock when you've been told you are fine?? Then i just started to get worse, more tiredness, more forgetfulness and terrible weakness and breathlessness. Back to my local dr, who by the way is lovely and helpful, he again upped my betablockers to 3.7mg and said i need to go back to see the heart dr at the hospital urgently to see what is going on. But that urgent appointment is 3 months away, we don't have private health insurance here in England, we just have to wait our turn, so there is nothing i can do to find out why i'm feeling like i feel.??

The bigger the dose of beta blocker, the more side effects. Plus, the bigger the dose, the more chance for an interaction with foods or drinks, especially those containing potassium, calcium or sodium.

Also... your medication causes your body to retain potassium. If you consume too much potassium, it can lead to all kinds of nasty side effects, including breathing problems.

Your medications also effect your body's handling of calcium and sodium, so you have to be careful with your calcium and sodium consumption, IMHO.

Heart Failure also messes with your ability to process calories, especially carbs. People with Heart Failure MUST limit their carbs, or it increases the chances of becoming Diabetic.

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I decided to ring the hospital and speak to my heart dr's secretary to see if i could speed up my appointment, i was very lucky that my heart dr just happened to answer the phone as the secretary was off sick. She made it clear that she was in a meeting and did not want to talk, so i very quickly told her i was having difficulty with everything and that my local dr had told me i had heart failure, and she replied with ' oh i don't think so'?
But she said she did not have my notes there and was very busy and i would get an appointment, which i did, for 3 months later. This has left me even more confused now?

The question that I have is: Who is more confused, you or the medical professionals who are treating you?!

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2 weeks ago it was Mothers day and we went out for a meal, i only ate half my meal and half my pudding, had a glass of wine, ( i don't drink at all normally) and a coffee. I came home and my heart hurt, it would not stop racing, it would not come below 115 bpm, 6 hours later it was still racing so i called a dr who said i needed and ambulance, off to hospital i went and waited ten and a half hours left on a trolleyto be seen by a dr, this dr went on to say i had PAF??????? I asked him to explain to me what was happening to me and he said it meant i had Arterial Fibrillation that stops and starts but it will all be explained in my discharge letter.

The number one prescribed medication for Atrial Fibrillation is Digoxin.

You may have consumed too many carbs, plus the wine, at that meal. Heart Failure causes the body to have problems processing calories, especially carbs. That is why I eat six small, low calorie meals per day. It is the main reason why I have gotten so much better. The other reason is Coreg (Carvedilol), which is an outstandingly effective beta blocker for treating and improving Heart Failure.

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He wanted me to go on a 7 day heart monitor THAT SAME WEEK, to see what my heart is doing, and to have a visit from a Heart Failure nurse so she can explain to me all what is going on. ( why a heart failure nurse if i don't have heart failure?) Well that was over 2 weeks ago, i never got the discharge letter to tell me what was happening to me, ive been chasing it ever since, which is just stressing me out, ive had no appointment for the heart monitor to be fitted and no appointment to see the heart failure nurse, our national health service is in crisis and it is just so badly run. They also put my beta blockers up yet again to 5mg. So i am left here wondering why i went to hospital for that day, what exactly did they find. I have no one to ask, no one to turn to or anything.

I am so sorry that you have been going thru this awful experience with the health care system and with your health problems. Your frustration level must be very close to it's limit!

The heart monitor would only confirm to them what you and they already know, that you have an erratic heart that is in Atrial Fibrillation.

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I did ask my local dr for copies of any letters he had from the heart dr i see, or any other letters concerning my heart, and i was surprised to read these letters as this is what they said, but again i don't know if this means a great deal or not.........
Mild dyskinetic septum.
Mild MR .
LV apex/lateral wall/inferrior apical wall appears hypokinetic
Plus the mild Pericarditis
Plus i was born with mild Pulmonary valve stenosis.
Plus this AF thing.

I don't know what of the above means i have heart failure, but my local dr said that i most certainly do have heart failure and on this 'New York scale ' thing he rated it on, it was 2 out of 4.

The worrisome parts are the problems with your left ventricle and the AF, both of which can be treated effectively with "effective" medication and a healthy, low calorie diet, small meal diet, AND watching the sodium, calcium and potassium intake.

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So all the above confuses me totally, would the above mean that is why i feel like i feel, or am i being over the top, i just don't know what to think.
No one has told me not to eat big meals, nor not to do anything that might effect my heart.

It makes sense, though, doesn't it? If your heart is weak, you don't want to overwork or stress it too much, right? I am not a health professional, nor have I had any training or education in health care. I just post what I have done to greatly improve my Heart Failure, and my health, and to control my Atrial Fibrillation.

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The other thing i have now is for example last night, i felt i could not breathe properly, so i ended up staying awake for the whole night as i could not sleep. I had to keep opening my mouth to gasp for air, then try and get to sleep, but i never managed to get any so today i feel rotten, im tired, weak and its horrible. I do have one of those finger pulse monitor things that measure your pulse and oxygen levels, and last night mine stayed down at 90% to 91%, but if i opened my mouth and took a big gasp of air it would go up to 97%? Why is this happening? I just don't understand and don't know who i can ask.

At night, your circadian rhythm causes your body to shut down and calm down to facilitate sleep. As a result of this, it exposes your body to problems for which your body easily handles during the day time. At night your body pumps more melatonin, which enables sleep; and decreases adrenal hormones which protect against asthma.

In my case, my night time breathing problems were caused by either asthma; consuming too many carbs during the day (or too late at night); or consuming too much potassium, calcium or sodium during the day; or drinking too many liquids during the day, or if I had done something to strain or overwork my weakened heart.

I've also got to avoid heart irritants and stimulants, such as caffeine, or chocolate, or harsh chemicals, or cigarette smoke, etc.

When I was much worse, I had to sit up to watch tv, or to sleep. If I reclined, I would have problems breathing. Many Heart Failure patients have to sleep sitting up or they will have breathing problems and be sick as a dog the next day.

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Is it ok to let my oxygen levels be this low for hours on end, i just don't know and cannot get an appointment any sooner with a heart dr, still got 2 months to wait.

From what I have read, readings below 90 can indicate serious problems.

One thing that I do, when my heart is not pumping very well, is to take deep slow breaths and let the air out fully and slowly and repeat until I feel better.

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Today as i said i dont feel great, im weak and get breathless so very easy, but i feel like i have chest pain, but its in my back, not my chest?? All i can say is its like someone keeps pinching my heart, but through my back, and it hurts. Is this just a muscle problem or would it be down to what i have wrong with me, should i be doing anything about it, can you see how confused i am now.

When the heart is laboring; or the metabolism is dysfunction due to too high levels of potassium, sodium or calcium, the body's metabolism tries to correct the metabolic dysfunction by pumping corrective hormones. These corrective hormones are very healthy and helpful, but when they are pumped too much, the over-pumped hormones make the patient sick as a dog for at least a day.

And, of course, one has to also consider the complexity of all of this mixed with a woman's normal hormonal cycle, and hormonal changes, of which I know little about.

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I don't have the same heart failure as you, i dont have the one where i have fluid, so i can lay down and am ok, i dont swell up or anything.
I am going to go back and see my local dr tomorrow and see if there is anything else he can help with, but as he said to me before, he cannot give me the proper advise i need as he is not a heart dr.

It doesn't really matter whether your heart failure is the same as mine or not, IMHO. When your heart is not pumping correctly, your heart causes very similar difficulties and hormonal reactions from your body, as it does in mine. The medications that would be effective for you, would be very similar to the medications that would apply to me.

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I'm so sorry to go on this long, but i so need answers asap, i just want someone to look at what it says i have wrong with my heart, and tell me if this is why i feel like i am feeling and the symptoms i am getting are because of this as well. I hope you can understand in all my warbling on what i am trying to say,

Many thanks for taking the time to read this.

Willow xx

Good golly, miss Molly, that was one heck of a loooooong post! Whew!

However..... you had a lot to say, didn't you. You also have a lot to deal with! I'm glad that you posted in such detail, because you really posted a complete picture of what you have been enduring. I feel your frustration and wish that you could get more prompt and more effective medical care.

My responses to your post only represent my uneducated understanding of my own heart and health problems. I could be wrong on one or more of my assumptions and statement. But, I wanted to let you know what I have gone thru and what I have done to greatly improve my health and heart failure and Atrial Fibrillation in the hopes that some of my ideas and actions could help you and/or make you better understand my struggles with similar health problems.

I hope that you are having a good day and that you slept well last night. I hate the "next day" malaise that comes after a difficult night of breathing problems and erratic heartbeats.